When you are in the hospital often you notice things. Things that people who don’t spend much time there pay no attention to. For example, most people who come to visit the hospital find themselves staring into the rooms of all the other kids who are there. They walk by looking into each room, focusing just on the kid in the bed, or in my case, on my daughter. They don’t smile, they don’t wave, they just stare. At times it makes me angry and I want to flip them off. Other times, I wave, and sometimes, I laugh. When we were on our trip to Boston, I figured it out. I think I understand what they’re looking at.
Getting to Boston took us twelve hours. And we did not drive. Two airplanes, two taxis, and a train, twelve hours. I was sick the entire time. Just nervous, but my nerves we so bad I was sick to my stomach. This Boston trip was BIG. Boston Children’s Hospital…Harvard. According to US News and World Report the greatest institution it the country and home to one of the only 7 pediatric motility specialists in the World. I was scared to hear what they had to say, and even more scared that they wouldn’t have anything to say.
As the Taxi pulled up to the hospital there was a HUGE banner, rated #1 Children’s Hospital in the US. It was the first thing you saw. Immediately I felt at ease. I felt like we were in the right place, I felt like we were about to get all the answers we were waiting for. We went to the clinic and waited for our appointment. They took us to a room and the DR. came in. He was really handsome. Distractingly handsome, and horribly arrogant. He welcomed us to Boston and said that he has taken Faith’s case because he believes he is able to help her. In the next hour, he talked to me about all the cutting edge things they are doing at their hospital. Medications he said Michigan has never even heard of. He criticized the work that had been done at Michigan saying he would have done things differently.
It was very hard to hear, but it was also why we were there, to see what if anything they could do for Faith.
Faith was admitted a few hours later and prepped for the Operating Room the following day. That night we were wowed by the technology in the hospital, there were robots everywhere, delivering medicines, delivering food. It was really cool. I was also wowed by the patients that were surrounding us. When you are in hospitals a lot you also are very aware which children are the sickest, and here they were everywhere. Our room had a window, and out that window were windows to the rooms of the other patient rooms. As I looked out one particular room caught my eye. There was a sign, it said Molly in really bight colors. On the bench in that room was a girl Faiths age, sitting with her mom. They both looked so tired. Molly looked bored, and uncomfortable. The mom looked so scared. They both looked so sad. Looking into Molly’s room made me wonder, what do people see when they look into our window?
The next Twenty four hours were some of the worst in our journey so far, Faith was hurting, she was scared, and at one point she even quit breathing. It was a terrible. In the end we had good information so it was worth it, but it sucked. One of the procedures that was done, that is only done in a few hospitals in the US on children is colonic manometry. This is where they stick probes into Faiths colon and test her colon for function. This was essential to see if we will ever be able to get rid of her colostomy. The top part of Faith’s colon when given the strongest stimulant you can give a child showed function. Which was great to see. The Dr who said Michigan didn’t do things the right way then told us he is certain we would see function in the lower part of her colon. That if she had made it to age 5 there had to be some function. In fact he guaranteed it. They put the strongest stimulant into that part of her colon and there was no movement at all. In fact that section of colon showed absolutely no function what so ever. Confirming what Michigan had been telling us, since we first came to them, that the pathology that Michigan had based all of their treatment off of, was in fact, accurate. That our doctors at Michigan, the Harvard of the Midwest were accurate in their treatment of Faith’s disease. This was a huge relief.
We then left Boston, ready to get back to Michigan and the doctors that we have grown to love so much. I was excited, I couldn’t wait to get to her appointment, to tell them what we had learned. This doctor said, we can take her off half of her meds, that we don’t have to do all those colon washes, and that she should be fine in school. He told me everything I wanted to hear. When we got to the clinic three of Faith’s doctors came in to hear the news. They cautioned me. Faith is a difficult case and this Boston Dr. has never treated her disease before. They agreed to let us try his plan…She was back in Mott within a few days. Her Enterocolotis was back, and her colon wasn’t working again. She was pretty sick and I was really scared. They got her back on her usual meds doing our usual washouts and she was feeling better.
We scheduled another admission for January to insert a port thru her appendix into her colon to irrigate the colon from the top down. It is the least aggressive approach we can take right now, and they are not sure its going to work, there is a chance it won’t, but they want to at least give it a try.
So what are they looking at? The people that stare as they walk by. They are looking at what they are afraid of. A sick child. I am certain there is nothing that is more scary than a sick child. It not something you can explain, its not something you can rationalize. And it’s not fair. I think it’s every parents worst nightmare. So when they walk by they are looking at what scares them most.
When you look into our window what do you see?
You see a mom, who looks tired and confused. Who looks five years older than she did a year ago. Who looks scared and uncertain all the time. Who is beyond exhausted but can’t sleep.
You see a little girl who is often pale, and tired, and cinched over from pain in her belly. She also looks scared.
What you would see if you could look just a bit closer is a mother who to spite all of the difficult challenges we’ve faced over the past few years, has built a bond with both of her children that she is certain wouldn’t have been there if we hadn’t faced all of this together. A mother who has fallen totally in love with her daughter and is inspired by her love and strength. A mother who is changed for good.
What you would see if you could look just a little closer, is a little girl who thanks me, for taking care of her, for sleeping next to her in the hospital every night, for holding her hand and being there when she is scared. If you keep looking you see a looking you see a five year old who has had more medical procedures/surgeries in the last year than most of any of you in your lifetimes. She is brave and strong, and determined to make a full recovery. All of this is beginning to get to her, she too is forever changed. Someday she will do amazing things. Honestly, she already has.
Before bed the other night she asked if we could pray together, I asked who we should pray for and she said, lets pray for the kids who are sick and their moms who are tired. I said, you mean us, Faith? She
said yes, and for my friends at the